Tag Archives: development

Braxton is BEY-AWESOME!

Braxton is awesome! He’s so awesome. He’s beyond awesome! He’s bey-awesome!

You might recognize that if you’ve seen “Bolt” 467423 times (but who’s counting) and remember Rhino saying that into the A/C vent. If not, let me refresh your memory ūüėČ

 

Braxton has been doing some really incredible things lately. I can’t even believe his awesomeness right now! ¬† As you know, Braxton has been making great progress walking as long as we hold one of his hands. ¬†He is getting much faster and able to maintain his balance much better. ¬†Well, on Wednesday, he was off of school so we had his Physical Therapy session here at home. Then, this happened….

Yes! Your eyes did not deceive you. Braxton took his FIRST independent steps in therapy. ¬†He took up to 5 steps at a time at least twice and then 2-3 steps each time after. ¬†It was pure coincidence at first. ¬†I was walking Brax to his therapist when I slowly let go and he kept walking!! We were both surprised and decided to test him and sure enough, another 2 steps. ¬†I made Aileen grab my phone and start recording. ¬†Braxton took small steps multiple times in therapy. It was so awesome to see and I’m so glad I caught it on video.

Happy ThanksgivingFor Thanksgiving, we visited Joseph’s parents and Braxton showed off his walking skills and even took a couple independent steps for his grandparents. ¬†He really enjoyed sitting on the front porch in a rocking chair slowly rocking himself in the cool breeze. ¬†A year ago he was only starting to crawl, so it was like a totally different child was visiting this time. ¬†Braxton enjoyed exploring his grandparent’s house and gave grandma and grandpa lots of love.

Friday, we drove back home because Braxton had a Physical Therapy session in the afternoon. ¬†He wasted no time showing us he was still working on walking. ¬†He took 6-7 independent steps TWICE!! The second time, he might have taken 2-3 more steps, but his therapist ran out of room to back up so Braxton just kneeled when he got to his therapist. Then, Braxton got a little diva-ish and decided he was ‘all done’ with therapy and refused to even stand. Little stinker!

His awesomeness did not end there. ¬†Tonight, he managed to walk up stairs with me! My back has been killing me all day, and I could barely bend over to pick him up, so we walked over to the stairs. ¬†As I started to try to pick him up, he picked up his little leg and placed it on the stair in front of him. ¬†In disbelief, I waited to see what he would do next and sure enough, he beared his weight and pulled on my hand to lift himself up. ¬†And without prompting, he repeated the action to go up the next step. ¬†I know that he isn’t technically ready for stairs and his PT might even discourage it a little, but Braxton definitely understood what he was doing and he honestly only need help to stay upright, and I used my leg as his backboard so he could push up and off of me as needed, but he did all the work. ¬†He even reached out to the handrail for balance and to pull himself up! I tried to get him to do it again so I could catch video, but he wasn’t feeling it. ¬†Nevertheless, he is making INCREDIBLE progress!! I am sooo excited!

Braxton is truly beyond awesome! He’s bey-awesome!! Look out world, here comes Braxton!

Braxton Walking

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Typical, Yet Far From Typical

Big Good Morning Smile from Brax

Big Good Morning Smile from Brax

Here lately, Braxton has made some significant progress. ¬†As he is getting older, he is “catching up” on some things, yet far behind in others. ¬†I catch myself thinking, yup that’s what a toddler is SUPPOSED to be doing. ¬†Or saying things like, boy it’s like we have a real toddler around here! (Obviously, he’s real, but he’s not at all been a typical toddler until recently) Braxton will be 2 years old next month (I can’t believe it!), but developmentally, he is still at about 10-11 months I’d say. ¬†For instance, he is crawling fantastically and pulling up to stand and trying to cruise, which is typical for a 9 – 10 month old. ¬†Once he really starts walking, I’m certain he will make so much more progress. ¬†He’s getting pretty good. Here he is during a Physical therapy session doing some assisted walking…he took 30 steps while I was there for the tail end of the session.

Toys all around him.

Toys all around him.

Braxton is also doing really great with exploring his environment. ¬†One minute he’s at the patio door and the next he’s in his therapy room with all the toys in the middle of the floor. ¬†Yup, typical toddler leaving a path of destruction behind him. ¬†For a long time, Braxton just sat next to us, slept, and pretty much did nothing. We’d play with him and there was no registered emotion. ¬†Now, I walk in to a room and he’s pulled toys off the shelf, emptied toy bins, and crawling over to another toy and playing all on his own. ¬†When we sit and play with him, he is actually quite interactive and will laugh and smile the whole time. ¬†Especially when sister plays with him. He likes to pretend to knock her over and when she exaggerates the fall, he thinks it’s hilarious. ¬†The sound of laughter fills my home and heart.

Are you talking to me?

Are you talking to me?

Braxton now also knows his name. ¬†Just one other thing we don’t realize actually has to be learned. ¬†I would call him all day long and get nothing in return. But a toy goes off and his head whips around. At first, I figured he was being a typical toddler by ignoring mom and only paying attention to cool toys, but it’s just taken some time for him to learn we’re talking to him and not the wall. ¬†In the past couple weeks, I have called his name and he turns around with a big smile on his face. Or if he’s across the room, he turns around, sees me, smiles real big, and crawls as fast as he can over to me. ¬†It’s the sweetest thing, but it’s been a long time coming. ¬†I never thought it’d be almost 2 years before he understood much of anything. ¬†He knows his name now, and that’s huge.

Another typical toddler thing he’s doing is dropping things on purpose and then crying dramatically to sucker mom into picking him up. ¬†I have sat and watched him literally stick his pacifier over the edge of the play pen, swing it around, and then throw it. ¬†He then stares at it, and then goes in to full on crocodile tears and drops to the floor just to make sure mom knows he’s really upset. ¬†I just laugh.


Braxton is doing so well and I just love watching him develop. ¬†Each and every accomplishment is celebrated in our home. ¬†I am often so overwhelmed with joy that I just cry thinking of all the things he is doing that no one ever thought he’d do. ¬†I’ve read the reports, I’ve talked to our therapists..they were all really worried at first, and so were we. And now, we all rejoice with his progress. ¬†He never ceases to amaze us with his courage and determination. ¬†Some days, in some moments, he’s just like any other typical toddler, although in reality he is behind and ¬†so far from typical. ¬†One thing is for sure, he is one extraordinary little boy who is going to continue to defy the odds and surprise us all.

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Neurology Update

Braxton looked like such a big boy waiting to be called

Braxton looked like such a big boy waiting to be called

Yesterday, I took Braxton to follow up with his Neurologist. ¬†Overall, I think it was a pretty good visit…we didn’t receive any bad news or anything, so I guess that’s a good thing. ¬†Our neurologist is very nice and extremely knowledgeable, but it still seems with most of our doctors, that they literally review the chart about 5 minutes before walking in the exam room. ¬†They tell me things they’ve already told me before (perhaps they think I’ve forgotten, seeing my preparation with charts and spreadsheets in hand you’d think they’d know better) and ask me questions I’ve answered for them a hundred times. ¬†I get that you have a lot of patients, but would it be so difficult to do a little more prep and at least make me think you care? =/ Ok, vent over, back to the appointment.

We went back over the medical history, and he asked if there were any new developments…doctor, we haven’t seen you in 6 months, of course there are new developments, but would you just ask me what you want to know, otherwise we’ll be here all day. ¬†We discussed Braxton’s initial Brain MRI again, and he reiterated that Braxton has a dysplastic corpus callosum. ¬†He mentioned though, that this wasn’t the CAUSE of all the other issues, that there was some other root that was to blame. ¬†[This is actually a question I had previously, because looking up signs and symptoms for agenesis of the corpus callosum showed several things that Braxton has done or experienced. Part of me thought, “Hey, I’ve got it! There is no other problem, it’s because of this that everything else is happening!” Whomp. No such luck.]

Naturally, he told me it was critical that we find the genetic cause for everything. ¬†I told him we were waiting for the results from our Exome Sequencing, and he looked and didn’t see anything in the file, but said he’d talk to our Geneticist since she is in the same office as him and see if he could find anything out. ¬†The doctor pointed back to the physical features Braxton has that point to a genetic disorder (prominent ears, forehead bossing, etc) ¬†and noted since multiple systems were involved that it was not simply something neurological in nature. ¬†He told me that developmentally any issues that arise from this would be closer to those that affect people with mild cerebral palsy. ¬†He did not say that Braxton has CP, but that his issues would be similar. ¬†I was also told that Braxton’s condition could be noted as Static Encephalopathy – meaning a disease or disorder of the brain that will remain unchanged.The good news in that, is that it can’t get worse. ¬†Doesn’t necessarily mean it can get better, but at least we know it won’t be worse (always reassuring). The key to all of this is stimulation and intervention. ¬†How do we do that? By taking advantage of services and therapies, which we are already doing. ¬†I am SO fortunate that we were hooked in to all the therapies we needed shortly after our discharge from NICU. ¬†I know this is not the case for so many and it breaks my heart. ¬†Knowing that kids CAN be helped IF they are helped early on, but don’t get the help they need because they fall through the cracks and end up worse than they should be just kills me.

Braxton was showing off the entire appointment. ¬†He was babbling, sitting up, pulling forward to crawl, pulling up to stand, picking his feet up, he just couldn’t stay still. ¬†The doctor obviously noted my confusion and fear and said, “Hey look at him, look at how great he’s doing. ¬†You certainly have the therapies you need and to see his progress is pretty cool.” Yup, the doctor said Brax was “pretty cool” [that’s not news to us ūüėČ ] I asked about needing a new MRI and he said that he definitely wants us to have the MRI repeated, possibly this summer. ¬†(We’re going to try and coordinate with ophthalmology so Braxton doesn’t need to be put under anesthesia more than necessary) It is important to monitor the brain development to ensure that there is nothing new or worsening. ¬†Although he mentioned the condition would be unchanged, the continual testing and monitoring is necessary, because..well, because you just never know. ¬†Just because it shouldn’t change, doesn’t mean it won’t.

Recently, I read about gelastic seizures, also known as laughing seizures, and became concerned because I felt like Braxton may have had a few episodes. These “laughing seizures” are just that, random outbursts of laughing/crying for a period of time. ¬†I can recall at least 3 times that Braxton just started laughing for no reason, we thought it was cute, but then the laugh turned in to more of a cry with a grimace but still sounded like laughter at times. ¬†It was the weirdest thing. ¬†At the time I didn’t think much, but then I came across the article and my heart about fell out of my chest. ¬†Everything I read, said these kinds of seizures are difficult to detect on an EEG which measures brain activity and can determine if a child is having seizures. ¬†But when the doctor realized we haven’t had an EEG done since birth (ahem, SEE why you should look at a chart BEFORE you walk in the room!), he said we needed to have it done very soon. ¬†An EEG will tell us if there is any slowing of Braxton’s brain activity that would be a concern or lead to seizure activity. ¬†I only know that when I was younger I had febrile seizures, that would only occur when I had a high fever. ¬†One of my sisters had one when she was 6 or 7 and was put on anti-epileptic medicine, but it was the only one she ever had. ¬†All of that to say that seizure activity runs in the family, so Braxton definitely NEEDS to be tested. ¬†We will return in 2 weeks to have that done. He also recommended that we start seeing the Developmental Pediatrician in the office who can monitor Braxton’s developmental delay. ¬†We already have one, but their office stops seeing him at age 3, so it was recommended we go ahead and make the transition to someone who will follow him for a longer period of time and can note progress from Point A to Point B. So, that’s just one more appointment to schedule. Oh, what fun!

I asked him for the technical diagnosis with regard to the corpus callosum since it has come up in personal circles with other moms looking to find someone with experience with a particular callosal disorder. ¬†The technical diagnosis for Braxton is Hypoplasia, which is a thinning of the corpus callosum. ¬†The entire structure in his brain is present, it’s just thinner than it should be. ¬†There is also Hypogenesis which means part of the structure is missing. ¬†Confusing, I know, which is why I asked for clarification. ¬†I’ve since looked into the National Organization for Disorders of the Corpus Callosum and through further research, I learned that these fall under an even more broad category: Dysgenesis of the Corpus Callosum¬†(DCC) – which means the callosum developed, but developed in some incomplete or malformed way. If you are like Joseph, you don’t want to hear all the technical mumbo jumbo (that’s mom’s specialty), but instead you want to know what does that mean for my kid. ¬†Here is what I pulled from the NODCC website with regard to behavioral expectations. ¬†[Of course, whatever Braxton’s genetic disorder is, will more than likely alter some of these expectations, but at least we have them for point of reference. ¬†Regardless…it’s still a very long, hard road ahead.]

From the NODCC:

What are the common developmental problems that may occur with disorders of the corpus callosum?

  • Behaviorally individuals with DCC may fall behind their peers in social and problem solving skills in elementary school or as they approach adolescence. In typical development, the fibers of the corpus callosum become more efficient as children approach adolescence. At that point children with an intact corpus callosum show rapid gains in abstract reasoning, problem solving, and social comprehension. Although a child with DCC may have kept up with his or her peers until this age, as the peer-group begins to make use of an increasingly efficient corpus callosum, the child with DCC falls behind in mental and social functioning. In this way, the behavioral challenges for individuals with DCC may become more evident as they grow into adolescence and young adulthood.

 Behavioral Characteristics Related to DCC 
This is an overview of the behavioral characteristics which are often evident in individuals with DCC.

  • Delays in attaining developmental milestones (for example, walking, talking,reading). Delays may range from very subtle to highly significant.
  • Clumsiness and poor motor coordination, particularly on skills that require coordination of left and right hands and feet (for example, swimming, bike riding, tying shoes, driving).
  • Atypical sensitivity to particular sensory cues (for example, food textures, certain types of touch) but often with a high tolerance to pain.
  • Difficulties on multidimensional tasks, such as using language in social situations (for example, jokes, metaphors), appropriate motor responses to visual information (for example, stepping on others‚Äô toes, handwriting runs off the page), and the use of complex reasoning, creativity and problem solving (for example, coping with math and science requirements in middle school and high school, budgeting).
  • Challenges with social interactions due to difficulty imagining potential consequences of behavior, being insensitive to the thoughts and feelings of others, and misunderstanding social cues (for example, being vulnerable to suggestion, gullible, and not recognizing emotions communicated by tone of voice).
  • Mental and social processing problems become more apparent with age, with problems particularly evident from junior high school into adulthood.
  • Limited insight into their own behavior, social problems, and mental challenges.

These symptoms occur in various combinations and severity. In many cases, they are attributed incorrectly to one or more of the following: personality traits, poor parenting, ADHD, Asperger’s Syndrome, Nonverbal Learning Disability, specific learning disabilities, or psychiatric disorders. It is critical to note that these alternative conditions are diagnosed through behavioral observation. In contrast, DCC is a definite structural abnormality of the brain diagnosed by an MRI. These alternative behavioral diagnoses may, in some cases, represent a reasonable description of the behavior of a person with DCC. However, they misrepresent the cause of the behavior.

I sure am thankful for that last paragraph, particularly the last sentence. ¬†One of the doctors recently recommended further testing for Autism, which I just didn’t think made sense, and after talking with our therapists, primary care doctor, and asking neuro yesterday, they all said that is an incorrect primary diagnosis to give Braxton. ¬†Neuro said that some of the symptoms he exhibits could end up giving him a secondary diagnosis of something like Autism at some later point in time, but at this point that was not the root of the problem and it had been misattributed. ¬†*sigh* always more questions than answers. ¬†But, good news, I think ?

Waaaaa, he's so big!

Waaaaa, he’s so big!

Baba ma da baba

Baba ma da baba

Sorry for the long post, this is one of those ‘for my own information and if I don’t post it here I will forget or never find it again if I write it down in a safe place.’

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Super Saturday

Rarely do I post twice in one day, but today has been amazing! Braxton tried to WALK today!! And he played catch with me!!

He’s been taking a few steps holding our hands, but today he walked about 20 feet with me!! We caught him a little bit later on video:

So incredibly exciting!

And if that wasn’t enough, Braxton sat with me for a good 30 minutes rolling a ball back and forth. He just laughed and laughed the entire time! Dad caught us playing a little bit:

 

Moments like these are so incredibly precious to me.  For a long time, we thought moments like this would never happen, so to finally see such progress is so amazing.

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Yayyyy!!! Braxton did it!!

Just a quick post to announce…

BRAXTON IS OFFICALLY CRAWLING!!!!!

Soooo exciting!! I sat him down and next thing I know he crawled FORWARD over to a nearby toy. I moved him back and watched him do it again. I did it at least 5 times hahah I am so incredibly proud of little man! Sent the video to his speech and PT and PT supervisor and they’re all so proud of him too.

What a great day!

So Proud

Messages from all of Brax’s therapists on his new milestone ūüôā

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